Topic: Really bad nausea with babesia? Also, just freaking out...need advice.
Hoosiers51
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Member # 15759
posted
Sorry to clutter up the board, because I feel like lately I have been.....but I am just freaking out.
Things have been going really bad. I need advice. I need to know what to do.
The past few days have been horrible. I never have really talked about my "past" before on Lymenet, or in Lymechat, but I used to be so sick with Lyme and co's I could barely do anything. So sick I didn't know what was going on around me, completely out of it.....I don't know how I ever got fed, etc.
Anyways, I can feel myself slipping back there, very quickly. I never thought I would see myself this sick again.
The past couple weeks I got the sense things were slipping, so I kept trying to scramble to figure out what meds to change, etc. Now I feel like I've crashed and it's almost too late for that.
Please, just tell me what I should do. I need to know what infection to treat. I am going to keep slipping if I don't figure out what's wrong. Here is the situation:
I have been on Mepron for 4 1/2 months, and during that time, my health has been slowly deteriorating. I didn't really have babesia symptoms when we decided to start the Mepron, but it was just this strange random decision on my LLMD's behalf, since I wasn't better from my Lyme and had had a positive babsesia test in the past.
I did Mepron 3 years ago for 3 months when I first had my positive Igenex FISH. I herxed---some night sweats, bad memory problems, and really bad nausea where I felt like I could vomit. Sometimes I did vomit, sometimes I didn't, but I was often very close to vomiting.
What's interesting is that I perceived this as the babesia being active, not a negative response to the meds. Nausea is a symptom of babesia.
Like I said, I have been backsliding. One of the most disturbing things is that the nausea is back. By nausea, I mean, if I don't sit very still, and have someone bring me a snack, or lay down, there is a 50/50 chance I'll vomit.
I have been on Mepron 4 1/2 months, like I said. My question is, why now? I increased my Artemisinin (Nutricology brand) from 200mg/day to 400mg/day on Tuesday. I am pulsing 4 days on, 3 off.
Could that really be what is doing this to me? I am literally as sick as I was at my worst. Today was the first day that that is official.
I am in a MAJOR daze. Time seems to FLY by. Like, I'll blink and 3 hours go by. Everything going on around me seems like it isn't existing. I think that is how I survived years of this back in my dark days.
But today is the first day of this.....so maybe it's not too soon to reverse it. I am so out of it. I can't even feel my body...it's like I'm floating. In Singleton's book, and on that famous babesia symptoms list, that is a babesia symptom. Floating.
In a couple days, i have gotten to the point where I can't do anything. My husband does almost everything for me. I'm not saying, "feel sorry for me," I am just trying to give you guys info so you can give me advice. A few days ago, I was running errands.
I don't know what to do because my LLMD recently decided Mepron isn't helping and it's time to switch to Bart treatment...which I haven't done yet because I need to go to my local doc and get her to write the scripts. Now I'm panicing. It seems like babesia just flared just to make us both look stupid for wanting to switch.
Could all this recent craziness really be just from increasing the Artemisinin?
Today I haven't even taken it because i'm on an "off" day of the pulsing. Should I stop my Mepron like LLMD said, even though it seems like this babesia is taking over?
The whole time up until the past week or so, I have been saying even though i'm treating babesia I feel like I have Bart. I have/had TONS of bart symptoms like twitching, psych stuff, etc.
So should I go ahead with originial plan and start treating bart (with rifampin and minocycline) regardless? And then just stay on the Artemsinin and hope that takes care of the babesia?
Also I should mention I was on high dose Amoxicillin up until last week with my Mepron/Zith until I reduced it when LLMD told me nothing I was doing was helping.
UGH. Anyways, the moral of the story is that I'm really sick and I don't know what to do....what to take....what to treat. It seems like I have all 3 infections flaring and I don't know where to start.
Thanks for any advice anyone has. I hope i'm not being too dramatic, but this post probably epitomizes how I feel right now.....
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
PS---I just tried to re-read what I posted and it is sort of confusing. Basically, my question is did anyone else get this "almost about to vomit" thing with babesia?
And, if it is what I think it is.....a sign that my babesia is out of control.....what do i do now?
(the nausea is not correlated at all with when i take my meds, or which meds i take, etc)
Posts: 4590 | From Midwest | Registered: Jun 2008
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kelmo
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posted
It was a part of my daughter's babesia treatment. I think she lived on anti-nausia medication and Meclizine.
My daughter is standing here and she says it was bad.
Could've been another reason she got off the mepron.
Posts: 2903 | From AZ | Registered: Feb 2006
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Tracy9
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posted
I vote for sticking with the plan. I know how much you have been struggling with the Mepron. Our LLD would never keep us on anything not working more than a month or two; I think you gave it plenty of time to work and it wasn't doing it for you.
Devin, I think you need the Bionic 880. I am getting desperate and Six is feeling great over there; you are so sick, you are so young, you deserve every possible chance to beat this.
You have been sick a long time. The meds just aren't doing it for you, same with me. I'd go ahead and switch to the Bart treatment, but consider what other possibilities there are for you to get your life back......
OK, ok....I'm being selfish. I just want to go to Germany together.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
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posted
Why would that pop up now though, 4 1/2 months in? The artemisinin increase I guess? Think this babesia flare means I shouldn't let my doc stop my Mepron?
(not necessarily directing these questions to you kelmo since we have already spoken about this...thanks for your reply though and for understanding.....greatly appreciated!) Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Tracy......thanks for your advice. Means a lot. I think I'm just having a hard time ripping myself away from these meds. I was saying earlier, in another post, I think it's a "fear" thing. But you may be right about abandoning the Mepron.
When I read what you said I almost teared up because it was so heartfelt....so thank you. I know you are struggling right now too....we will figure this out somehow!
Thanks again Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
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posted
I completely understand the fear thing. I am always scared to let go of anything I'm doing, always petrified I'll get worse.
I think the fear is greatest when you know you aren't replacing it with something else targeted at the same villian, as in your case.
I have some Artemisia someone here very generously mailed me, and when I get a little energy back and on an even keel I'm going to try it. I felt GREAT on Mepron and Zith, but was taken off it after a few weeks because of elevated Liver stuff. I have never tested positive for Babs, but have all the symptoms and think I should address it.
Hang in there sweetie, we are all here for you. See you in a little bit in chat.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I'm so sorry that you aren't doing well lately. I really felt your pain. I am sick to my stomach and sometimes vomit as well. I can understand how HORRIBLE that is. Since becoming ill, I've always had PAIN but the other parts of my body felt okay - no fatigue (not very much anyway), didn't feel "sick", could eat fairly well. Lately, I've just gotten horrible. I feel SICK. And I have pain. We have been eating out quite a bit. I have 2 kids I should be making dinner for. Instead, I've been having hubby pick stuff up on his way from work.
I used to be very independent. I would never accept help from anyone, even if I needed it. It's out of my control now. I HAVE to have help.
I'm just as lost as you are when it comes to meds. As you probably already know, everyone here knows so much, I'm not one of them. I just wanted to say that I can totally sympathize with you and I'm so sorry.
I have never been tested for babs, I don't think I have hardly any of the symptoms...maybe that's why ex-llmd didn't test me for it. I have Bart and Lyme, and my tummy is ALWAYS sick. I've also added daily horrible headaches to my list. Not fun.
I hope you get it figured out and start feeling better. This illness sucks. It's unreal how long it takes to get better. And the world doesn't even notice it or recognize it.
*hugs*
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
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Hoosiers51
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Thanks, hopeandhealth. All this support is making me feel better. I hope things look up for you.....I can relate to always getting take out or quick meals, etc. Posts: 4590 | From Midwest | Registered: Jun 2008
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merrygirl
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posted
I don't have any advice, but wanted you to know that I am thinking of you and hope that this all gets sorted out for you ASAP.
One thing is that Mepron made me really depressed and anxious.
We will all get through this!
hang in there.
Hugs, Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I threw up every morning on mepron and ART-turns out it was from gastritis, which is aggrevated from ART. I started on prilosec, licorice chewable 20 minutes before a meal and l-gliutamine to heal my stomach..took a while but it worked. Now, I take malarone-no problems.
Posts: 561 | From eastcoast | Registered: Aug 2006
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groovy2
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posted
Hi Hoosiers
I did not herx on mepron till month 4 like you- Then all hell broke loose- NO Fun-
The Floating is I did also -
My symptoms All got much worse - During the next 18 months I added and switched meds- Herxed the Whole Time-
I had been sick for 18 years before starting treatment Very sick-- Bed ridden -
So I am clear on your situation - fill me in on some details-
How long sick ? Medicines taken ? results good or bad ? How long meds taken ?
List your symptoms - ALL of them- Give Details like -Only at night--Left side ect-
Give symptoms a rating in Severity 1 thru 10 --10 Bad--
What have doctors thought ??
I am going to PM you--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Sorry that youve been feeling so bad Devin. Ive sorta been in the same boat as you the past few months.
I just have some opinions like the rest of the people here. First, I definately think that the art is making you herx. Artemisinin hits different forms of the babesia and crosses the bbb much more effectively than the mepron. It also hits all sorts of other parasites as well as possibly bartonella.
So, that could be the cause of you feeling so bad. Also, dont discount the fact that bartonella could be playing a part. I know that in Singletons book he mentions the floating is babesia related but i think it is also related to bartonella.
If in fact you do have bartonella, Dr. B. says that you should treat that before babesia. So u may want to take care of the bart now and go back to the babesia.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks Jay and Joe.
Jay, I'll give you a brief overview:
Bitten at age 6 in Florida more than once, temp of 103 immediately after one of the bites, got migraines and body aches but symptoms eventually faded without treatment.
Got sick at age 17.....became severely ill almost overnight. Had spent time in Eastern PA a few weeks prior (tick exposure?). First night of symptoms I had strange chest pains and went to ER. I was at an overnight lacrosse camp at the time. Days later was "couch-ridden" with severe fatigue, severe cognitive impariment, couldn't read, listen to others speak even because I would get confused.
Also had migraines, sensitivity to light and sound, lots of psychological problems like irritability and anger, GI upset, etc. I dropped out of high school.
These symptoms never got better....this was 2001. My memory of the first few years of my illness is fuzzy.
Got diagnosed with Lyme in 2002. "LLMD" missed the Bart and the Babesia because my main symptoms were just fatigue and cognitive stuff. Did extensive (over a year) of Doxycyline, Zithromax, Biaxin. Also did 3 months IV Doxy and 1 month IV Rocephin. NONE of it made me better at all.
Took a break from treatment than went to another LLMD. During the break in treatment I did tons of detox, vitamin IVs, etc, and some of my symptoms got better but I was still only functioning at about 30%.
When I started with my new LLMD, he found the babesia via Igenex FISH. After 3 months of Mepron and Zithromax, I saw improvement. Only saw the imrpovement afterwards though. Did high dose Amoxicillin next and saw more improvement, especially cognitively and with my headaches.
My circulating Immune Complexes have been very high still during this time, so doc still thinks (rightly so) my infections are active. He re-tests for coinfections and Bartonella comes up positive. Since my symptoms are always just fatigue and cognitive (mental tasks tire me), it's always hard to know what is active.
So at this point he treats with Malarone (only 1 pill per day though, but i'm small), Cipro, and Zithromax. This was for 4 months. Didn't see a ton of improvement.
However, in typical fashion, once the treatment is over and I go back to the high dose Amoxicillin I feel better. (is it progress from what i had just taken or is it finally being back on the Amox?)
At this point in the story I'm about 5 years in to my illness. I am feeling better-ish....able to take a couple classes part time. Probably functioning at about 30-40%, on a really good day.
Then, I get a tetanus-diptheria-pertussis vaccine so I can go to IU and it floors me. I relapse and never really recover. I stay on the high dose Amoxicillin and wait it out.
Then, this June, my immune complexes (my LLMD loves testing these) are once again through the roof so my LLMD decides to retreat me with Mepron and Zithromax, convinced something has been reactivated. I say, "I think it's bartonella".....but for some reason he decides to treat babesia.
Which leads me to now. 4 1/2 months of slowly getting exhausted beyond belief on Mepron and Zithromax and Amoxicillin. I started Artemisinin in July but couldnt' tolerate it because of ear symptoms. I restarted it in late September at a very low dose.
Just recently I have been able to increase it to something a normal adult would take, and this week I finally made it up to 400mg per day. BAM! I feel incredibly sick......my dark circles under my eyes are horrendous, I haven't bathed in days because I'm too weak. Looking at my face, you can tell how sick I am. So that is where I'm at now.
If you have any questions, just ask. Hope I was clear enough.
The only benefit I feel I have garnered from this Mepron/Zithromax recent fling is that a little bit of my original personality is back and I do have the ability to think a little more fluidly (for example, I can watch serious TV shows without being frustrated, etc). I'm not sure if this is due to the Mepron or the Zithro treating the Bart.
I should also add that during the last 4 1/2 months I took Plaquenil for about 6 weeks, and had a major Bartonella herx from it (probably from it making the Zithro work better).....pins and needles pricking entire body, muscle twitches, etc. But had to stop the Plaquenil due to toxicity.
Okay, I'm really done now. Anyways, hope this info helps you Jay. Thanks for reading and for caring! Posts: 4590 | From Midwest | Registered: Jun 2008
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lymielauren28
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Hey Hoos,
I'm so so sorry that you're having such a rough time.
All I can offer is my opinion like everyone else - and my opinion is that you're herxing big time from adding and then increasing the art.
I've been where you are now and the immediate reaction is, "Something's wrong!" and you have the urge to stop everything you're doing - when I feel that way I know I'm in a huge herx.
My personal opinion is to stay the course - feeling this way so shortly after increasing your art dose means you're doing something right even though to your body it feels very wrong and very scary...I hope I'm making sense here.
The malarone dosage you're on is very tiny - I take four a day and I barely weigh a hundred pounds. Perhaps at that dosage you've just been keeping the babs at bay? And now since adding the art you're actually killing them causing a massive increase in symptoms?
This is what I'm leaning towards, but again you know your body better than anyone. I wish I could be of more help...
I hope know matter what that you start to feel better soon!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymednva
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Hoos,the first thing that comes to my mind is have you discussed these recent changes with your LLMD? If not it seems that should be done before making any changes in your protocol.
While I have not experienced the nausea with babs, I have been tx'ing it for over a year, first with Mepron, Biaxin and artemisinin, now with an increased amount of the art. and bactrim, if that truly tx's babs. All the time I have been on plaqueinil.
I still herx on the art. alone, but not as hard as I did on the Mepron and Biaxin. I do have Babs Duncanii, which is known to be more difficult to tx.
Wishing you better health, and an answer to your questions.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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WildCondor
Unregistered
posted
It's probably the artemesia..just a guess though. When you get a symptom like nausea, you should try stopping all your meds for a week, then add one back at a time for a week and see what is causing it. Also, get some phenergan (anti nausea) in case its unbearable. it makes you sleepy but it works awesome for nausea. You might have some gastritis from the meds, I've had that many times, usually you need carafate, or a break from some of the meds. Always make sure you take your meds with a full meal too.
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MariaA
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I have mild (!) babesia symptoms and I have that nausea you're talking about . It's been impossible to brush my teeth with an electric toothbrush because it makes me retch.
One thing to consider is that the Zithromax might be part of your fatigue and part of why you get 'better' when going to Amoxycillin alone- I had a really hard time with azithromycin alone (not with any other drugs at the time) and it disappeared the moment I stopped it. Every time I've taken a macrolide since then the exact same level of tiredness/brainfog comes back, and I don't think it's a herx.
I'm dealing with that right now and the LLMD says there's not really an alternative to macrolides with the Mepron therapy.
I haven't done the artemesia (but helped treat my boyfriend for malaria with it so I've researched it a LOT) and my first instinct is to drop that part of the combo and see if you're feeling better. Many people on Lymenet have described reactions much like you're talking about, with it. It doens't mean you don't need it, it just might be easier to deduce what's causing your symptoms- whether you're actually getting worse or if you're tolerating artemesinin therapy very poorly for one reason or another.
-------------------- Symptom Free!!! Thank you all!!!!
posted
My opinion is tough it out for 2 more weeks on Mepron. Most LLMD's now recommend a minimum of 5 months for Babs treatment,
Nausea/dry heaves/vomiting has been one of hubby's worst symptoms since day 1 over 7 years ago. Could be Babesia, but more often from Bart in his case.
If the Babs meds are really working in my opinion you will have an increase in Bart symptoms while treating Babs since both affect red blood cells.
Are your bilirubin levels elevated -- if so that can cause nausea. If they are elevated that could also be a sign that you are killing red blood cells and the babs meds are really working.
Up until a couple of weeks ago hubby seemed to be making progress treating Lyme, Bart and Babs all at the same time. Unfortunately it may have been working too well. Due to brain inflammation his LLMD suggested decreasing 2 of his 5 antibiotics -- when that didn't work he started him on low dose Cortef today.
The phenergan doesn't do much for hubby's nausea -- will help with tremors sometimes. Sometimes actually makes him throw up. Zofran didn't do much either.
Another possible cause of nausea is toxicity -- similar to chemo reactions. But if that is the cause then Zofran should work.
Sorry you are feeling so bad.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
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posted
Just wanted to say thank you to everyone else who has continued to respond.
I am feeling just unbelievably tired, struggling a lot. I will keep you all posted on what I decide to do.
I am starting to think some of this fatigue could be from drastically reducing my Amoxicillin....from 10,000 mg/day to only about 4,500 mg per day.
Bea,
I have bloodwork from a month ago, and my "Bilirubin Total" is 1.1, and the range is 0.3-1.2. So it looks like it is BARELY in range. Wonder if that is significant.
I even mentioned that to my LLMD, and he didn't say anything.
Thanks for the insight though, much appreciated!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Clarissa
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posted
I just want to send you a big hug and let you know you're in my thoughts & prayers. This sounds just horrible. I think Mepron can cause nausea, although I've never taken it myself.
I agree with Joe about the Bartonella floating because I floated around my room a LOT during Bart treatment. I know you're not hitting it yet but maybe you're getting the symptoms.
Bart also hits the GI tract HARD. I used to vomit up my Biaxin and plaquenil daily (6 years ago) and that's why they switched me to IV.
Maybe you need to stop the mepron, art, Babs treatment and hit the Bart with IV to avoid your stomach issues.
Gosh, you're going to get like 20 different answers and I'm so sorry mine isn't consistent either.
Hoosiers51
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Member # 15759
posted
Just wanted to say thanks...the outpouring of love from everyone has been reassuring.
And I actually appreciate all the different viewpoints, because it helps me think things through in my own head and weigh all the possibilities of what might be causing this. Reading all the possibilities in print helps.
So THANK YOU!!! I am hanging in there, and this site is helping!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I can empathize with the nausea symptom. Nausea has been my number one, most debilitating symptom since day 1. The good/bad news is that almost all of my other symptoms have subsided with treatment with the exception of this nausea. Granted it isn't as bad as it was at one time but some days are still a real struggle to get through.
I haven't found the magic answer but can just share some random thoughts....
For me, my nausea is in no way attributed to the medications I've been on. Also, no anti-nausea meds help one bit. One LLMD thought my nausea might have been due to Babesia (tested negative) so I treated for a few months. No real improvement. My new LLMD of course now thinks it could be BLO and has started me on rifampin....process of elimination at this point.
Do you have any abdominal pain? I don't.
Something to think about is gastroparesis. Lyme can cause this and it causes a great deal of nausea. A simple gastric empyting study will tell you for sure and there are some meds that will help get your stomach going again.
Also you should have your cortisol levels checked...
I keep searching for answers and haven't found anything yet....hang in there!
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